What would accessible healthcare mean to you?

If healthcare was accessible…

“I could be more independent.”

“I would regain a lot of self-respect as well as better health.”

“I could be more involved in discussions about my care.”

These are just three of the answers that I got when I asked people who are deafblind and their families about what accessible healthcare would mean to them. At some stage in all of our lives we will need to use healthcare services, but for many these services simply aren’t accessible.

No one should leave a doctor’s appointment without understanding what has been discussed or be left with a prescription they are unable to read, yet this is a regular occurrence for many of the deafblind people we support. Our research shows that one in two (56 per cent) deafblind people have left a GP appointment having not understood what had been discussed. More than three quarters (85 per cent) of deafblind people don’t get information about their healthcare appointments or follow up correspondence in a format that they can access. Most reported that they needed to rely on someone else to read their letters for them so that they could know what was contained in them.

Whilst our research highlighted a number of barriers and challenges, the key message that came through was that if healthcare services were accessible, people who are deafblind would be able to be active, independent participants in their own health and care.

This is why the Accessible Information Standard is such a game changer for people who are deafblind in England. The Standard sets out what health and social care providers must do to meet the information and communication needs of those who access their services who have sensory impairments and/or a learning disability.

There are 5 key steps that providers must take:

Identify the communication and information needs of those who use their service

Record the communication and information needs they have identified clearly and consistently on the individual’s record.

Have a consistent flagging system so that if a member of staff opens the individual’s record it is immediately brought to their attention if the person has a communication or information need.

Share the identified information and communication needs of the individual when appropriate.

Meet the communication and information needs identified. For example, send an appointment letter in Braille or book an interpreter for an appointment.

The changes outlined in the new, mandatory, Standard are often small and inexpensive adjustments, but can make a world of difference for a deafblind adult visiting their local GP or seeking social care support.

For the Standard to reach its potential, it’s essential that it is implemented in full. We are calling on providers to implement the Standard across the board and ensure that everyone’s information and communication needs are met in order to ensure they are able to be active participants in decisions about them. It’s also important that people with information and communication needs share these with their health and social care providers so that their needs can be met.

Whilst the Standard is mandatory and there are legal duties to implement it, my hope is that we can also see past that and straight to the person at the centre of it. That it’s not just a ‘must’ or a ‘should’ in the eyes of providers but a ‘want’ and an ‘essential’ because it’s the right thing to do. Let’s turn ‘If healthcare was accessible I could’ into ‘Because healthcare is accessible I can’.

2 thoughts on “What would accessible healthcare mean to you?”

The Disability Discrimination Act 1995 required service providers to make reasonable adjustments. The Equality Act 2010 replaces this duty with a similar one to make reasonable adjustments and specifically states that providing accessible information is a reasonable adjustment. Health services have largely ignored this legislation.

How and why will the new standard have more impact than legislation?

If resources had been put into bringing discrimination cases against health services under the Equality Act instead of developing a new standard that repeats existing legislation, how many cases could have been taken?

If health services continue to fail to meet their duties under the new standard, how can people enforce their rights? Will this still mean using the Equality Act?

Thank you for your comment. As you say, whilst there is extensive legislation and guidance out there regarding disability discrimination, in reality many service users continue to receive information from health and social care organisations in formats which they are unable to understand and do not receive the support they need to communicate. The Standard doesn’t set out to replace the Equality Act, rather it provides specific detail on the steps that providers of NHS and adult social care must take to ensure that people with disabilities or sensory loss receive accessible information and communication support. The Standard builds upon the Act, by clarifying required actions and expectations in health and care settings. The Standard has been issued as an Information Standard under section 250 of the Health and Social Care Act which means that it is mandatory. It is also part of the NHS Standard Contract 2016/17. We are encouraging people to approach their local Healthwatch, contact the NHS Contact Centre or complain to their service provider if their needs are not being met. – Sarah